A few days ago, I posted a status update on the Thoughts and Ramblings Facebook page asking those with Sjögren's/chronic illness if they could pick just one symptom to get rid of for the rest of their lives, what would it be. I knew what the answer would be for me, which was going to be the basis for this blog entry, but I wanted to see if others with Sjögren's felt the same way.
I was taken aback by how many responses I received with that poll and it was clear to me by the responses that fatigue was the clear winner; which is also the case for me. That relentless, brain-numbing fatigue that most people without a chronic illness typically cannot understand.
There was an article put out by the Sjögren's Syndrome Foundation last year that for the first time I have read, did an excellent job of describing the different types of fatigue encountered by those of us with Sjögren's syndrome. The title of the article was: 13 Types of Sjögren's Fatigue by Teri Rumpf, PhD. The article does and excellent job and you can read it by clicking on the article title link above.
For me, as for so many of us, the Sjögren's related fatigue that comes with this illness is often the most debilitating symptom we have to deal with, day after day, week after week. It affects every single aspect of our lives and even worse, fatigue is often misunderstood not only by the other people in our lives, but also by our medical providers. It is one of those invisible illness symptoms that is usually not outwardly obvious to other people. Or on the flip side of it, people think they do understand what the fatigue is like because they too have experienced "tiredness."
I'm here to tell you that illness related fatigue is nothing like being tired.
I remember the days, before I became ill, when I worked as a registered nurse on a busy pediatric nurse, often on my feet for most of my twelve (more like thirteen-fourteen) hour shift and then commuting an hour each way to work. I remember the years I worked the night shift and could barely remember my drives home because I was that tired. Exhausted is probably a better word.
But fatigue is different for me than tiredness or exhaustion.It is that feeling that I physically cannot take another step, even if my life depended on it. Sometimes it is predictable and sometimes it is not. An example of this is that if I work two consecutive days at my current job, it is pretty much guaranteed that sometime in the following forty-eight hours, the fatigue will consume me. That is predictable.
An unpredictable example is going out with friends on a weekend evening, which happened to me recently. I had made sure I got enough rest for twenty-four hours before we went out. I was in good shape for the first few hours, but halfway through a concert, at an intermission, the fatigue hit me like a freight train and I almost actually fell asleep during the intermission while sitting in my chair! I really thought I had my bases covered, but that night, the fatigue won.
And that's the problem, many times the fatigue does win. It very much affects my work life, what little I do have of one. It affects all my personal relationships and definitely my social life. And, it is frustrating as all hell. Because when you are fatigued, everything else is worse and I mean everything. It impacts my pain levels, my other physical symptoms, and definitely my ability to cope. It contributes to anxiety and depression and overall can cause a feeling of hopelessness.
I would say that fatigue is probably the issue I have had to work the hardest at and it has taken me the better part of the last seven years to do so. Working on it doesn't mean I can get rid of it, but it does mean that I am able to live better with it and improve the quality of my life. It means that even though I hate it with a passion, it does not always win. And the times it does, it does and I move on.
There are a few strategies that I have used to help me manage my fatigue more effectively. One of the most important is planning ahead of time and prioritizing. Planning meaning not just my activities, but my rest as well. That is hard for me because when I am feeling less fatigued, I want to get as much done as possible. However I have found that for me, the fatigue is cumulative and rest periods every day are critical in managing it.
Another important component to managing my fatigue is diet and exercise. I cannot emphasize this enough. And oftentimes, I need to emphasize this even with myself because it is an area that I can easily neglect. I have found a significant improvement in my fatigue levels when I exercise three to five times a week and cut out processed sugar, gluten, and processed foods. The exercise doesn't even have to be much, maybe a fifteen minute walk or a half hour of gentle stretching. I just have to move my body.
I also need to listen to the fatigue. When its here, its here. Yes, there are some things I have to push through, like finishing a shift at work. But otherwise, I listen to my body and give it the rest it is screaming for. I find that most times when I do this, I recover more quickly than if I did not listen to my body and kept barreling through my day.
Lately, my fatigue has been more manageable for me and while I know that how I manage it is a crucial component, I have also been finding some relief lately since being on a steady dose of low-dose naltrexone (LDN) and increasing one of my thyroid medications. I always encourage people to talk to their doctors about checking their thyroid and also exploring any other possible causes of fatigue such as adrenal exhaustion, etc.
What techniques and management strategies have you used to help manage your illness related fatigue?